So it's been a little while since my last post so I thought I'd give you an update. I know I said my next post would be on the practicalities of eating healthily but it is on it's way. It's taken a bit longer as I've needed to research it a bit more and that requires brain power. Brain power is slightly lacking at the moment. The change in the weather has left me feeling a bit fluey with a foggy head and pretty achey. That's without having been outside as well. It's like we are sponges, just soaking up anything going around, usually nasty things of course. I'm a bit worried that I'm coming down with a cold, I just hope it doesn't develop into anything worse and for that to then be disastrous on the condition has a whole. Afterall I am still living with the effect of the last chest infection. But I shall try not to catostrophise.
Anyhow the good news is things have not been too bad. Actually in some respects I need to give myself more of a pat on the back. This is something that can be taken for granted, as you always think that you should be doing more. But of course this is always in comparrison to what a 'normal, healthy' person can achieve and not an improvement on how you are at your worst. Going back to when I went to see the rheumatologist, she said for me to try a medication called amitriptiline. Amitritiline is a drug that used to be used as an anti depressant but since the invention of better anti depressants it is more often prescribed to treat pain and to aid better sleep, which in itself can have a big impact on pain levels. At that time I was still on too high a dose of gabapentin to take them but because they haven't had much of an effect I have been reducing the dosage slowly. It's important to come off these tablets slowly because of the effect that they have on the neural system.
For the past 3 weeks now I've been able to take both medications. I have really noticed a difference since starting on them. My pain levels have been much more manageable, which is a big relief. I have gone from needing 8 tramadol and 8 paracetemol to generally needing only 4 of each a day. One side effect I noticed was that it was taking ages for me to do a wee (sorry for that) and I hate slight pain in my lower back. But that has faded now. The doctor said it was likely to be a reaction to the combination of the amitriptiline and tramadol. It took me a while to notice because I thought it might have just been me not focusing haha. But more noticeable and fantastic is how much easier I'm moving about. It's much more fluid and not as stacatto as it was and the best part is each step is not pure agony. I'm managing to move around the house more and although I try not to go up the stairs too many times I am managing to get down stairs everyday. I started off with taking 10mg of amitriptiline at nighttime. Or what again for a normal healthy person would be called 'before bed.' Haha. Anyhow whether it's the tablets or not there has certainly been an improvement. Last Thursday I was even able to walk from just outside the doctors surgery to the waiting room and back, which is around 20 meters each way. This felt like a major achievement, however ridiculous that may sound to some people. But to me who had been bed bound and could just about shuffle over to the commode it was a moment I was grateful for. I felt confident that I could do it too, judging by how easily I was moving around the house and it not taken ages to get from A to B.
However because this was quite the achievement it has meant that I have been suffering with post exertional malaise since. Generally feeling more fatigued and achey. In a way it's nice to feel that way for a reason. Okay, all be it a very small reason. I don't think I will ever grow used to simply walking to and from the doctors waiting room being enough to make me suffer. But of course that is that type A personality of mine rearing its head. I was rather disappointed that I couldn't go to a family get together on Saturday, despite resting on Friday and during most of Saturday. There were just not enough spoons in the stamina drawer unfortunately. I did feel quite disappointed at not being able to go but I really did not feel up to it and the relief of being able to have walked some had improved my mood. My doctor was made up to see that I could walk into his office. Definitely a clear sign that things were looking up and because of this we have upped the dosage of the amitritiline to 2 tablets before bed. So here's hoping for more of an improvement. Now that I have achieved that I am desperate to be able to do more. Call me greedy but it is such a small ask.
In other news I had my assessment interview for Personal Independance Payment on Friday. Luckily I was able to stay awake long enough for it. I was feeling very tired after the mamouth walk to the doctors office. But I feel it went well. I got a chance to put across my side of how the condition effects me. She asked me what constitutes a normal day, to which I said that there is really no such thing. Everyday is so different. Every hour can be different. Sometimes things happen spontaneously, where you think I'm feeling quite strong and comfortable right now let's go out for half an hour. Others you can plan and organise to the nth degree and rest up for days but they still don't happen. It can all heavily depend on my sleeping pattern at that time. Just in the past week alone I have been up all night then asleep all day, I've had fragmented sleep and been sleeping for long amounts of time. But I just tried to put across the things that I can and can't do. Things I need help with etc. How it can limit where I go and who I see. She seemed really nice and understanding and encouraging me to have my say, whilst also listening to my Mum's side. But of course it's not up to her to make any decisions. So we'll have to wait and see. I've also sent in some of my blog posts for them to take into consideration and get more of an idea of how the condition manifests itself.
So there you have it for now. Hopefully I'll be up to getting my next post sorted soon but health is always the more important thing. I hate that statement but it's true. Let's hope the higher dose of amitriptiline has yet more of a good effect and I can try and not catch any bad colds or bugs that seem to be rife at the moment.
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